Welcoming Our Hillary Campaign Staffer!

Mom and Eisha

We are so excited to welcome Eisha, a Hillary campaign staff member, to stay with us for the duration of the election season!

Melissa and Eisha

While I was napping Monday afternoon, Eisha arrived with another staffer, Melissa, in tow.

We had a lovely dinner with Eisha and got to know her a bit--she's fresh out of college, smart, enthusiastic, polite, and ready to work really hard for Hillary. And, thankfully, she loves the dogs!

Eisha has settled into my den for the duration of her stay, and we hope she will make herself at home. Hopefully she'll get a few breaks here and there for us to share a meal with her, but these folks work all hours of the day, seven days a week. 

Eisha, Gershwin and Me

I'm really excited that Mom and I feel that my health now allows us to host someone for this long during the campaign. It feels like a perfect way to help with the election. Eight years ago we also hosted, but only for a short time because my health was too poor.

Welcome to our home, Eisha! We look forward to getting to know you and being your host family!

Thank you for your hard work to help elect Hillary for President!

Blessings,

Emily

The Big (Belated) Reveal: Bathroom Made for Me!

The 'Had to Have' Countertop Around Which the Entire Bathroom was Designed

Since April 21st, I've been enjoying my new bathroom tremendously! We could not be happier with how everything came together! Remodeling is never fun and is always exhausting, but this project was absolutely worth every bit of energy and expense.

Here's the link to the 'before' pictures.

Seated Sink Area

Being able to sit down while washing my face, brushing my teeth, doing my hair, putting on make-up, washing my hands, etc. makes a huge difference in my ability to manage symptoms. I can also take my time in putting on a little extra make-up or doing my hair, which feels like a wonderful treat. 

And There's Even a Make-Up Mirror!

Somehow the whole bathroom looks so much bigger than it did before! We can't believe how the room transformed into such a beautiful space.

Pocket Door and Double-Door Storage

We widened the doorway and also put in a pocket door to eliminate our previous problem of doors clanging together. A wider door means wheelchair access if someone would ever need it. The closet is set back with double doors. And voila! No more doors banging against each other!

New Bathtub and Shower!

During the remodeling process, our contractor and foreman asked me what I wanted and how I wanted things every step of the way. Some days I was overwhelmed by having to make yet another decision. We could not have asked for better people to work with--every single person that came in to work on the bathroom showed respect for making the space exactly what we needed and wanted. 

Decorative Tiles

Everything about the new bathtub is wonderful!

While shopping for the tile for the floor and shower area, I saw these decorative tiles made of broken glass and fell in love. We love how they pick up the colors in the counter top to create a cohesive look. One color is like a lovely rain and one is a nice earthy brown.

Fancy Schmancy Tub

Our big splurge was getting this new bathtub that is deeper than the one original to the house and is an air bubbler tub. These are different from jacuzzi or jetted tubs, and work by blowing air through small holes in the sides of the tub. Every evening I sink into the tub, put in Epsom salts, some essential oils, and turn on those bubbles! We did this to help with my pain and achiness. Gershwin and Tovah are fascinated by the bubbles. If the tub wasn't so high, I'm afraid Gershwin would jump right in because he loves water SO much! I often see a set of paws up on the ledge and a face poking past the shower curtain.

I Can Wash My Own Hair Now!

One of the best parts is that I can now wash my own hair. Because it is so difficult for me to lift my arms over my head, I couldn't wash my own hair in the old bathroom. I wasn't able to hold the sprayer and do all of the hair washing. Now, I am able to just sit underneath the sprayer and wash my own hair. I've even positioned the water on/off and temperature dial so that I can adjust it with my feet while soaking in the tub. Thought definitely went into every detail.

It's difficult to describe the freedom that comes from being able to take a bath on my own schedule and without assistance. Mom doesn't have to wait on me and I don't have to stress about working my bath into a certain time schedule and adding to her stress.

Look How The Shower Tiles are Reflected in the Mirror.

I wanted to create a warm, relaxing, beautiful space and I'm thrilled with the final result! I found it so overwhelming to pick out each individual piece for the bathroom having no idea what it would look like when it all came together. To make the space even warmer we have heated tile floors! :) The paint colors are Mystic Heaven (walls) and Gentle Sunbeam (ceiling). Also, since these photos were taken, I have found the perfect artwork for the bathroom, including a photograph brought to me all the way from the Netherlands from my friend Corina. 

Have I  mentioned that I LOVE how this space feels and looks? I definitely got my dream space filled with earth tones, water tones and sunshine. 

Blessings,

Emily

Ready for A Bathroom Made for Me

Original Floor. Oh my!

We have lived in the same house since I was nine months old, and many things are still original to the house when it was first built. We are long overdue for many remodeling projects to make our house more salable, but most importantly more enjoyable and fun for US to live in NOW.

We are not at all sad to see any of the original items in the bathroom GO! I used to spend many days using tracing paper and crayons to make rubbings on the linoleum floor. 

37 year old bathroom.

During my time of transformation last year we made the decision to do several things to make life more manageable and full for me. This included getting the puppies, getting an iPad, and deciding to re-do the bathroom so that it would be one that was more usable for me.

Making it Work, Tim Gunn Style. 

Recently, I've been using one of the kitchen bar stools to sit at the sink to brush my teeth, comb my hair, put on blush, etc. It's completely impractical for what I need. The new bathroom vanity will have a seated area under the sink so that I can easily reach what I need and sit while doing everything! Being able to sit at the sink might even give me the energy to put on a little make-up! :) I used to just get ready as fast as possible while trying to stand at the sink. Using energy for that could leave me worn out for the day. 

We Will So Not Miss This!

Because going shopping is so physically and cognitively exhausting for me, it has taken us over a year to pick out all of the things we need for the bathroom (and we're still finishing up with last minute decisions). Making decisions is exhausting! How does anyone design a WHOLE house?!

Can't Wait for the New Tub!

Our big splurge and what I am super excited about is a new bathtub. Taking baths is one of the ways I help to manage pain and calm my ANS. I also cannot stand to take a shower. The new tub will be deeper, have air bubbles (which are supposed to be very helpful for pain), and a lower shower head so that I can sit in the tub and no longer need Mom to wash my hair. I'm already dreaming about those baths!

Who Thought this was Practical?

We're putting an end to the commotion of the clashing doors. A pocket door will replace the main door, and the closet will have to small doors instead of one big one. I'll easily be able to spin around on my little stool at the sink to reach anything I need in the closet. 

Gotta Love This Counter Top.

We've put off so many projects over the years while we 'lived in waiting' for me to feel better. We finally decided to stop waiting for me to be able to stand at the sink or in the shower. We finally decided to stop waiting for me to feel better to risk the disruption of construction. I know the end product will be so worth it.

Blessings,

Emily

Demolition And Disruption

Asher Surveys the Scene

As of yesterday, this was the current state of my bathroom. In two and a half hours four guys were able to completely demolish our bathroom. (It's not a very big bathroom!)

No More Baths 

For the next four weeks things will be a little disrupted, but we are very very excited about the final product--a bathroom more accessible for me and a much needed upgrade from the 37 year old fixtures. My bedroom is right next to the bathroom, so I'm sleeping on an air mattress in the den for part of the day while they are here and trekking to a different bathroom right now. It's all a little tough on my body, but I'm at least a little more stable than I was just two weeks ago when I wrote about my setback.

Demolition Puppy Style

Puppies Love Toilet Paper!

In the process of trying to clear out the bathroom yesterday morning, Mom discovered the puppies had found various pieces of contraband--their favorite being a FULL roll of toilet paper. At least they had fun making such a mess!

The Evidence

The construction crew is actually more neat and organized than the puppies! We couldn't have asked for more pleasant people to work with and thankfully, the foreman is a HUGE dog lover. :)

Blessings,

Emily

A Quick Update from Our 'Herd'...

I haven't posted in almost a month, which has left some people worried and wondering how we are doing here. So, here is a quick check-in. Hopefully, I'll be back to blogging again soon. 


Last time I posted, Mom had just arrived home from the hospital. So first, the update on Mom.


Mom is doing GREAT! She is almost at the one month post-surgery mark. We are truly amazed at how well the recovery has gone. What a difference from her rotator cuff surgery and recovery. After the first couple of weeks, she was able to start driving again so she's able to go to the grocery, farmer's market, etc. We were all happier once she was 'free' again. :)


She still needs to restrict her lifting to no more than five pounds and take it easy. She certainly is not back to her normal energy level, but we expected this. She usually takes a little nap in the afternoons (while Fuzz sleeps right next to her). Her voice is still not quite back to normal and her throat still has a bit of a tickle in it. 


The recovery has been so much better and easier than we could have imagined. Still, she did not get ANY pain relief from her lower back/leg/hip pain, so she is very antsy to get the next surgery on her lumber spine.

I have been feeling very poorly, which has been disappointing to say the least. Dr. Complex is working with me to do everything he can to help me regain some quality of life. I will try to write a separate post (or posts) on that. Basically, I have had no break in the severity of symptoms lately.


Again, I've found myself using most of my energy on survival. Otherwise I try to do things that will lift my spirits. We are trying to get a StRoll in every evening (either me and Mom or me and Jeannine) to enjoy the beautiful trees, fresh air, singing birds, and prolific bunnies. Tomorrow night, I am planning to go see Jane Eyre...no matter what! 


Thanks your concern. We didn't meant to leave you all worrying (although your worry gene was correct when it come to my well-being). Thankfully, though, Mom is doing great.


Asher is starting to act like an old man, but otherwise, he is taking excellent care of us. He loves all of the napping going on here, as well as the times Mom and I watch TV or movies together in the evening. Nothing makes him happier than having his herd all in one place. :) Nothing makes us happier either. 


Blessings,


Emily

Birthday Blog: Turning 35

I am definitely late in getting a birthday post up, but it is still October as I start writing this. It is still 10/10 (which won't happen for another 100 years!).


Okay, so last year at this time I had a fantasy image of feeling fantastic after a year of Rocephin. In that image I felt much-improved health-wise and had a heck of a celebration of life and new beginnings at 35. Obviously, the significant improvements in health we had hoped for didn't happen.


Still, we all figured out a way to celebrate turning 35, and I ended up having a really special and beautiful birthday. We spread out the celebrating so that I could enjoy it and not crash too hard. Stopping the Rocephin before my birthday was definitely a good decision. Otherwise, I would have been too sick to do any of the things we did and I think I would have taken turning 35 very hard.

I spent one afternoon opening and enjoying birthday mail, one afternoon taking a couple of calls from friends, one afternoon going to the arboretum in town for the first time, one afternoon having a 'Princess Party' with Jeannine and Mom, and one afternoon having lunch with Dad and Abbie. I was so grateful my body cooperated the way it did! I was absolutely determined to carve out some time to celebrate even with the stress of the flood, etc.


I was surprised in the end how calm I was about turning 35. I thought I would be very focused on the losses I grieve, especially marriage and children. Instead, I found myself able to focus on the gift of being alive, of having new options health-wise, and of being incredibly loved and blessed in so many ways. 


I focused on the abundance of LOVE in my life, and it was a beautiful birthday. Thank you to all of you who called, sent cards, gifts, and wishes!


Blessings,


Emily

Photo: Pumpkin Spice cupcakes (gluten-free, dairy free of course!). It was very hard for me to stray from my traditional vanilla cupcakes with chocolate frosting, but these were worth it!; opening presents with Dad and Abbie (doesn't that look like Asher on the bag?!)...sadly we have no photos of us together.

A Crazy Month!

We have had a crazy month since I stopped the Rocephin! While the leaves were changing, the mums were blooming, and the pumpkins popping up everywhere, we ended up missing out on a lot of the ways we love to enjoy Fall.


The very abbreviated version of the last month:


1. I stopped the Rocephin.
2. Our basement flooded. Oh, the mess.
3. I turned 35. (And we did squeeze in some fun!)
4. Mom severely aggravated her spinal stenosis while working on the mess in the basement. She's been in a lot of pain (which is much improved with the prednisone). We make quite a pair with two people who can't function!
5. Dad and I travelled to see a new doctor last week.
6. I got a Red Rolls (an electric Jazzy wheelchair). 


Whew. It has been quite a month, with absolutely no down time to process. I do not do well with having no 'down time', days without appointments, or people in and out of the house. I realize that this is 'normal life', but my body gets overloaded easily.  Given the level of stress we've had, it is nearly impossible for me to evaluate how my body is doing post-Rocephin!


Really, I am over my days of being a drama queen and this is way to much drama! I feel like we have just had one thing after another and we need a break!


Last night I simply prayed for the time, energy and focus to blog and process the past month!


I hope to send out posts over the next couple of weeks on these topics, starting first with the doctor's appointment because it is what is most fresh on my mind.


And as I alway say, but I don't think I can ever fully say it often or well enough, thank you thank you thank you for your love, patience, thoughts, prayers, support, emails, and the joy you bring to my life!


Blessings,


Emily

Photo: Pumpkins and mums at the arboretum. My one big outing this month!

The Emotional Flood

I had no idea the level of emotional and physical stress the flooded basement would put on all of us.


The hardest part for me has been that I did not have the physical or emotional energy to deal with this level of additional stress. I was so worn down after the rocephin, I desperately needed some space. On top of the commotion, disruption, and questions of how much work we will need to do on our house, we have had to face the emotional side of losing and throwing away our 'stuff'.


I admit it, I'm a sentimental pack rat. A really bad one. But right now, bringing up the last 35 years of my life and throwing stuff away wasn't quite what I needed. I am not ready or in a good place to do it.


It is very difficult to explain the 'level of tired' I'm feeling after this past year. Not necessarily in a sad way, just in a "Whew, that was one very exhausting journey and I need a break" kind of way. I'm trying to roll with the punches that life gives us, but I haven't been doing very well with that!

One afternoon, I went out in the garage with Mom. I sat on a stool while she showed me what we had lost. We pitched all of our cassette tapes. Hundreds of them. Literally. I also pitched almost all of my mix tapes. That was very difficult for me, as they are filled with beautiful memories. In a different setting and a different time, this would have felt easy and good to do. Even as I type this I'm embarrassed that, in the grand scheme of things, I feel sad about losing cassette tapes!


Mom lost a lot of her things from her days as a professor. She wasn't quite ready to let go of these things yet, but she didn't have a choice either.


When I came inside, I collapsed into bed from the physical and emotional exhaustion of it all.




I know it is just stuff. I know we are never going to listen to cassette tapes again!  I have enough humor and perspective about the situation to realize that we really did not lose that much, we are very fortunate, we don't need this stuff, what we did lose is not a big deal, and that we really did need to clean out this crap anyways.  


But right now, it is like looking at my whole life spread out in front of me in a quite unpleasant and chaotic way. It is about remembering when life was good. As my very wise best friend Jeannine says, I look at the past and wonder if that was the best life will ever be because things have been so hard the last 12 years. I keep my hope that things are going to improve, that life is going to be better, but it is hard to face the past right now. It's not that I don't do my best to live the best life I can right NOW, but I long for better days.

Speaking of Jeannine, here is a photo of a caricature of the two of us at our prom in 1994, during those better days of which I speak. This too, was soaked in the flood. I decided to take a photo journal of things we had lost. This way, I have the memories without taking up the space in the house.


In so many ways I want to let go of the past and pitch stuff. So there is a mixed blessing in all of this. It just kind of sucks right now!


For a very long time, I have felt weighed down by the past and all of the stuff that has accumulated over the years. Even though most of the 'stuff' is out of sight, I feel as if it is taking away precious energy. I have very much wanted to let go, move on, and create new memories. I struggle to find good memories in the past 12 years compared to the fun and joy before I got sick. So it keeps me holding on to the past.


Cleaning and staying organized are continuously put on the back burner because I just don't have the physical or emotional energy for it. We seem to move from one health crisis to another. In between, we find it difficult to tackle another big project. If the energy was present, a lot of 'stuff' would be very easy to throw away. Much of it was just shoved in a basket or a Rubbermaid container 'to do later' when I was 'feeling better'. It is so incredibly frustrating to have a body that doesn't cooperate with what I know I need to do for my emotional well-being.


I desperately want to be able to separate the chaff from the grain. I want to be able to find the things I'm looking for when I want them. I want the most precious things preserved, and the rest discarded. I've read enough about organizing to know that you're supposed to spend 10 minutes a day, or work on this space, or tackle this first, but when you have NO physical stamina or energy and reading through papers is a challenge, these aren't realistic ways to approach organizing, which is part of what makes this process so frustrating. And when I do have moments of precious energy, I don't want to use it to sort through a bunch of crap. 


I want to be all Zen about this, live in the present, and not hold onto the past. But for me, it's a tough balancing act. How do we preserve memories of the past, especially of those really good years without holding ourselves back? Do we keep them only as memories, and not as 'things'? I know, especially amongst some of my other chronically ill friends, I am not alone in this struggle. Our lives look nothing like we had hoped they might, and even with great efforts at acceptance, we miss being healthy and the things we were able to do.  


My friend, Rachel, and I have discussed this topic a great deal. As she says: How do we find the balance between being realistic and staying hopeful? How do we make sure we are not living in denial about what we might still use? This is what I faced when parting with my bike and my saxophone. It is what I face now with my Shel Silverstein books or other items I thought I might save for my own children. How do we balance the sentimental and the practical?


This isn't to say that I haven't kept plenty of 'stuff' from the past twelve years, particularly in the form of letters, cards and photos--the ones that have lifted me up and sustained me over the years.


I wanted to start 35 out lighter and with a different mindset, so I guess this was one big kick in the pants to do so! The timing of this flood was definitely significant, but I did tell God that I wasn't amused! I will always have the memories, even when the 'stuff' is gone. Eventually it won't hurt so much. Eventually the flood of 2010 will be just a blip on the radar.


If anyone has tips on how to let go of 'stuff', how to decide what to keep and what to toss, and how to find ways to keep the sentimental stuff that you do keep organized, I welcome them.


The journey to clean out our basement and face the past 35 years has only begun! I don't look forward to using my energy to sort through a bunch of 'stuff', but I have known for a very long time that doing this and throwing much of it away is crucial for me to move forward, whatever life may bring. I want to live more fully in the present, and not be weighed down by the past. I want to use my precious energy for the things that matter most to me in this life. Oh, but first to sort through all of that STUFF!




Blessings from a sentimental pack rat,




Emily


Note: I have been working on this post for several days now and am feeling much calmer. We are still very overwhelmed by the potential work on the house to be done, and I am still overwhelmed about HOW I am going to tackle my 'stuff' so that I can move forward, but things are settling down a bit!


Photos: Hundreds of cassette tapes from my growing up; My beloved mix tapes; Caricature of me and Jeannine at prom.

Flooded

After I stopped the rocephin and had my port de-accessed last Tuesday, I felt calm, relieved and was very much looking forward to some time to recuperate emotionally and physically from the trials of the past year. We all were. Mom, Dad, me, and probably even Asher who has had to work very, very hard this year to protect and care for me! :)


On Thursday afternoon Mom arrived home from work to discover that our basement had flooded. This has happened before but this was particularly bad. The basement is Mom's living space--her bedroom, her office, and her comfy chair. It is also home to 35 years of STUFF--some of it worth keeping and a lot of it just crap that has piled up over the years. I'm a sentimental packrat. This does not help things! We've also shoved a lot of stuff into the basement over the years since I got sick hoping to 'get to it soon', but constantly being derailed by my health problems. 


Above is a photo of what friends and family carried up from the basement, most of which will go out to the trash tomorrow. 


We have many thanks to give to those who came to our 'rescue'. To all of you who gave us your time, energy, muscle power, advice, food, fans, emotional support and everything else, we are incredibly grateful. 


Right now Mom is hanging out in my den on the pull-out sofa while trying to get the basement back into some semblance of order. The continuous wet weather has not been conducive to getting the basement habitable again. It is still drying and smells musty, but we did have it cleaned and sprayed with anti-fungal and anti-bacterial 'stuff' (which stinks!). We are also trying to find the source of the flooding so that we can have the landscaping or structural issues resolved before another flood occurs. 


This has been very stressful and has certainly derailed both myself and my mom. We are both stressed for different reasons and in different ways. I have been struggling a great deal with feeling helpless and guilty for not being able to help. I don't do well with commotion and chaos, or a lot of noise and disruptions, which are par for the course in this sort of situation. The stress of the situation has been making me sick. I also hate seeing my mom so overwhelmed.


So, I've been a bit MIA lately and this is why!


Again, thank you to everyone who has chipped in to help us in a myriad of ways--with physical help, food, resources to use, etc. Our next step is some much needed, but not welcomed, home repair!


Blessings,


Emily

Photo:  Lots of stuff from the basement. Oh my!

Would You Like Some Dinner With Those Toys?

This is a common scene in our house at dinner time. As soon as dinner time approaches, Asher goes to his toy boxes, gets out multiple toys, runs around squeaking them, and then leaves them strewn around his bowl.

Then he cries and whines and waits and otherwise acts as if he hasn't been fed in ages.

Sixteen weeks into treatment, Asher is still taking good care of me every day. I couldn't get through this without his constant companionship...and his ability to make me laugh every day. He's such a clown!

Blessings,

Emily

Photos: Asher waiting for dinner...with a few of his toys.

On Second Thought...

I just might have to name my chair something related to the VW Beetle...

Hmmm...What do y'all think?

The VW? The Beetle? The Bug?

The decorating possibilities are endless!

If you didn't know this about me already: I LOVE VW Beetles and have always wanted one.

This 'collection' of VW Beetles is the closest I've ever come to owning one. And no, I don't need to be reminded that I'm now closer to 35 than I am to 25.

Blessings,

Emily

Photos: VW Beetle from Mom; VW Beetle from Jeannine filled with 25 of the gold one dollar coins (from Mom) that never quite took off!

Happy Fourth of July!

Hope you had a lovely Fourth of July!

We definitely did, but I'm too pooped now to blog about it!

Hopefully in the next couple of days I'll get some photos up of

the 'works!

Blessings,

Emily

Photo: Fresh, local blueberries. One of the few things that sounds good to me these days!